WHEN LAY PERSONS GIVE MEDICAL ADVICE

It's not uncommon for patients to believe in their chosen approach to treatment, particularly if the outcome was very
good, relative to the average experience.

In the case of a proactive patient who
uses self-identified strategies, there can be a very strong temptation to credit one's actions with the
outcome, which sometimes leads to the practice of giving medical
advice to others.

The rational might be: "I selected the strategies
based on scientific evidence,
and my outcome was excellent.
Therefore, the strategies are proven effective,
and are likely to
help others."

Let's examine the problems in this logic:

The patient
selects the strategies,
which are reported to be based
on scientific studies.

The
first
question to ask is if the research cited by the lay person
is preclinical* or
clinical?

*
Preclinical: it's well
known that cells put in Petri dish or transplanted into animals are
very poor models of the behavior of the tumor cells that originate in the complex environment of the human body.
The tumor itself changes when removed from the body and
will often die spontaneously in this artificial
environment.

Commercials for herbal products will
sometimes cite scientific articles that describe the
anticancer activity of their products, but many times omit or fail to
emphasize that the
evidence is based on preclinical cell culture experiments.

Cell culture experiments cannot account for how the compound is changed
by the body, or merely excreted
by the digestive processes.

Consider that only 1 in 5,000 compounds tested in cell cultures
experiments are even tested in humans.

The outcome of
the patient is reported as being better than average

Survival beyond the
average or median * is not considered evidence - no more than a person who smokes all of
his or her adult life without getting lung cancer is evidence that tobacco use is safe.

The average or mean is a middle point
along a continuum of what's possible. Many patients will
do better than the average using a variety of
approaches.

The median is a calculation of the middle that informs
about trends for large groups, it does not inform about
how effective a treatment or life style strategy is for an
individual.

Notably, the natural history of indolent
lymphoma is quite variable. For example, as many as 20% to 30% of patients will experience regressions at
some time in the clinical course of their disease." 1
The range of survival for indolent lymphomas is also quite
wide. You can live 3, 4, 10, 20, 30 years, or more.

Consider
that when a practitioner prescribes an alternative protocol
for 100 patients with indolent lymphoma, as many as
30 are likely to experience improvements, because of the
natural history of the disease as described above.. This "effect," - which has
a good
probability of being unrelated to the practice - will often result in strong
belief and promotions, as in: "How can you argue with success?"

The
layperson concludes the
strategies are proven
effective for the patient.

This is a
false conclusion. The patient could have done as well, or
better, with another approach.

The
layperson concludes the strategies are likely to be effective for
others.

This
conclusion does not take into account that
each lymphoma (even of the same type) can be biologically
and clinically unique.

The patient's experience with a
treatment or life style strategy
cannot inform about how many others will have no benefit,
or may be less better off.

To find answers to questions
about the clinical benefit from treatment or life style
practices requires controlled clinical trials. Testimonials
and single case reports cannot be considered
scientific evidence for this reason - particularly for
indolent lymphoma, which can wax and wane without
therapy.

Consider that even doctors have been fooled by
observations:

"For many centuries doctors used leeches and lancets
to relieve patients of their blood.
They KNEW bloodletting worked. EVERYBODY said it did.
When you had a fever and the doctor bled you, you got
better.
EVERYONE knew of a friend or relative who had been at
death’s door until bloodletting cured him. Doctors could
recount thousands of successful cases."
(Science-based Medicine)

The
layperson concludes that there
is no harm when the treatment
or life style strategy is safe.

This
is not always true. A strong belief in an
ineffective intervention can do harm, even when
the intervention itself is safe. For
example, when a patient postpones therapy too long, or
turns down an opportunity to cure the disease early, based
on the belief that an unproven approach can control the
disease.

Is it encouraging that an individual does well with lymphoma?
Of course. But one person's experience can only tell us something about the range of what's possible. It doesn't and can't inform about what practice, if any, led to the outcome.

Wendy S. Harpham, MD (NHL survivor)
writes:

"Patients who don't understand the difference between information based on theory, anecdote, historical analysis, or double-blind placebo controlled studies are making ill-informed decisions, believing alternative therapies are safer or more effective when they are not. Even patients who presume that alternative therapies are ineffective may use them. Why? When faced with a life-threatening disease requiring highly toxic treatments with no guarantees, or when dying because there are no effective conventional treatments, it takes guts to reject something or someone claiming to be able to save you, just in case you might be wrong."

WHY LAY PEOPLE SHOULD NOT DISPENSE MEDICAL ADVICE:

It's inappropriate for lay persons to recommend and actively promote medical
practices (standard, investigational, or alternative) as recipes for survival to other
patients for the following reasons:

(1) Each lymphoma (even if of the same
diagnosis) can be unique clinically, such as:
growth rate, sensitivity to treatments, location near vital
organs, bone marrow involvement, and so on.

(2) The biology of the lymphoma and the patient can have unique
characteristics that will result in very different clinical
courses, and responses to the same treatments. For example,
normal genetic variations in an individual's immune system may influence
the response to Rituxan.

(3) Each case can be unique, such as the
patient's age, general health, symptoms, blood counts, treatment
history, risk tolerance, secondary medical conditions, and access to therapies.

(4) By definition, lay
persons are not medical professionals and are likely to have gaps in
knowledge.

(5) Even a medical professional will not, and
ought not, dispense medical advice without directly examining the patient, and having access to the complete medical history,
the details of the diagnosis, the most current lab results,
imaging reports, and so on.

The clinical judgment of trained oncologists,
and the specialists we consult, are essential to the treatment
decision process. Ideas or suggestions by lay persons may be
considered of course ...however, at best, these should be
considered merely starting points for discussions with your doctors.

WHAT IS THE APPROPRIATE ROLE OF PATIENT NAVIGATORS?

Patients do have a lot to offer each other,
including mutual support and encouragement. Having gone
through the medical system, patient navigators may be able to help new patients to
locate credible sources of information on a variety of topics:

the disease and its
treatments - understanding the basic
terminology and concepts

how to prepare for
consults with medical doctors, prepare documents and questions

How to evaluate
medical claims and data ...the strengths and weaknesses of online medical information.

When asked for opinions about clinical
decisions
responsible patient navigators will underscore the limitations of
the information they can provide in informing the path others should
take.

Comparing Types of Medicine

Complementary Medicine:

Changing your life style in reaction to a diagnosis of lymphoma is most
likely considered complementary practices. Clearly it's both sensible and
beneficial to eat healthy foods, to exercise routinely (within your limits),
get adequate sleep, and so on. Good performance status is correlated
with improved survival in lymphomas. However, at this time there is no evidence
that exercise, diet, or herbs can directly affect the course of the disease.

Alternative Medicine:

By definition, alternative practices are non-mainstream
substitutes for standard medicine that are based on insufficiently- or un-tested, theories.
Taking reasonable doses of vitamins and herbs during watchful waiting, for
example, would not be considered alternative medicine, unless you were
taking very high doses (IV vitamin C for example), or an herb with known
toxicities (ie., apricot kernels) because of a belief that the benefits may
outweigh the risks. This use would be more like taking drugs without a
prescription. We think it's fair to say that profit motive is often behind
many promotions of alternative practices; but sometimes these practices are
promoted by individuals who believe that they have benefited from
the practices.

CAM stands for Complementary and Alternative Medicine.

While often lumped together, these are very different entities and approaches to illness. The goal of complementary practices (such as yoga,
acupuncture, meditation, etc.) is often to improve general health and
quality of life, which is almost always reasonable.

Recommending or using alternative medicine can range from irresponsible/foolish/criminal ... to
reasonable, depending on the type of cancer and what standard medicine has
to offer as treatments. (For lymphoma - a lot!)

Natural (herbal) medicine:

Natural or herbal medicine may be used for
alternative or complementary purposes. It's common to associate
"natural" with safety. But plants often produce
powerful poisons in nature in order to kill, or to avoid being
eaten by animals and insects, some of these compounds may cause
illness, others may become useful drugs, when purified, and
tested in clinical settings; other natural compounds are carcinogens
(capable of causing cancers). Problems with the
evidence on many natural supplements include:

bioavailability (or pharmacokinetics) - how the body changes or excretes the compound,
where the compound tends to go, the half life, and so on, which
affects blood levels and the potential to have therapeutic
effects on the cancer cells.

limited evidence of efficacy -
generally the evidence is limited to cell culture and animal experiments. Cell
culture experiments in particular are very poor models for what
happens in-vivo (inside the body). Cancer cells are
changed by simply removing them from the body, and many times cancer cells will die spontaneously in
cell culture, without adding any therapeutic compound.

dosing - generally information about
the dose needed to cause an effects seen in an animal or cell
culture study is not supplied by those who market it. An effective dose could easily
be a toxic dose, even for natural medicines. Taking some
kinds of supplements in high doses is not unlike taking
prescription drugs without
medical supervision.

Natural
Medicine - science blog: (scienceblogs.com)"It
isn't very surprising that plants contain anti-cancer chemicals;
they have being fighting a biochemical war against the world's
animals for approximately 300 million years (land plants,
anyway..) and have hence evolved chemicals that probably
interfere with virtually every biochemical pathway that exists.
Hence it is very likely that there are chemicals out there that
interfere with those chemical pathways crucial to the survival
and proliferation of cancer cells.

However, this does NOT mean that 'natural is best'. First, the
compound in question will only fight cancer as a secondary
effect to it's primary purpose (killing an insect that feeds on
the plant, for instance). Hence a synthetic derivative may be
far more effective. Second, the compound may be too unstable in
vivo, so again a synthetic derivative will be more successful.
Thirdly, useful dose ranges (between ' no effect' and 'killing
the patient') may be quite narrow, making direct consumption of
leaves/bark/etc either ineffective or highly dangerous or both.

In short, the 'big pharma' versions of these 'natural' drugs are
going to be more effective. That does not mean that all
information from these companies should be taken uncritically at
face value - you should always look closely and critically at
the real data supporting the claims made. However, at least this
is possible. With alternative 'cures', all you get is the
marketing.

Standard Medicine:

Medical care received from licensed doctors using the standard of care -
therapies or agents approved by FDA based on evidence from clinical
trials - or so-called empirical evidence that has undergone peer
review The quality of standard medicine can be uneven, depending on where you live, the type of insurance you have,
the experience and qualifications of your doctor, etc.

Investigational Medicine:

New therapies or new uses of standard therapies,
received during participation in a clinical trial sponsored by
drug companies or the National Cancer Institute. Importantly,
study protocols are reviewed carefully by the FDA and IRB
(institutional review board) in order to protect participants.
In early phase trials, for example, very close monitoring is
required.

The risks and potential benefits in taking part in a clinical trial
can vary significantly. Sometimes investigational agents can
be safer than approved standard drugs. Sometimes patients will
enroll simply because they have run out of options and need to try
something new. Not every trial is for testing new agents.
Sometimes, a study will evaluate the combination of approved drugs,
such as Rituxan with Gm-csf (leukine), or new dosing, combinations,
or sequences of available agents with the goal of improving on the
standard of care.